May is Lyme Disease Awareness Month

May is Lyme Disease Awareness Month, not only in the United States but around the world. This year in 2014 the CDC announced that their prior numbers of how fast Lyme Disease was spreading were not accurate. They upped the number of people infected annually to 300,000 across the United States.

Lyme disease is now in every state and in every continent except for Antartica. It is spreading quickly thanks to global warming and birds that migrate.

Lyme disease is a spirochetal infection caused by Borrelia burgdorferi. It is caused by a type of bacterium called a spirochete. An infected tick can transmit the spirochetes to the humans and animals it bites. There is new research that shows it is possible that other bugs carry Lyme and other tick co infections such as Bartonella. Research is also showing it may be sexually transmitted. Lyme disease is transmitted in utero. Lyme disease is a multi systemic inflammatory infection. If left untreated it will travel from the tick bite through your skin, through the bloodstream, joints, organs, and will establish itself in various body tissues, and can cause a number of symptoms incuding neuropsychiatric manifestations.

To see proper instructions on removing a tick please visit: http://whatislyme.com/what-to-do-when-bitten-by-a-tick

Lyme diseaese symptoms vary from person to person. They may start out as flu like and possible bulls eye rash, then symptoms might go away for weeks or months. They may reappear as time goes by as headaches, fever, joint pain, muscle pain, migratory pain, neurological issues such as memory issues, confusion, dizziness, word block, dizziness, and possible lead to seizures and possible death.

Children are affected harshly by Lyme disease. They are often misdiagnosed due to faulty tests or the misbeliefs of doctors that Lyme is only on the east coast or that you need to see a tick and rash to think you have Lyme disease. The symptoms in children can be a little differnt then in adults too. Often a child is misdiagnosed with ADHD, and Lyme untreated can lead to seizures, learning disabilities and autism. Here is a poll of Lyme parents to what their chidren's symptoms are: http://whatislyme.com/how-children-with-lyme-might-behave/

More research is needed on treatments for Lyme diseaese. Different treatments work for different people. Some patients are using long term abx including iv abx while others are treating iwth homeopathic remedies and diet changes. But trying to find a doctor who knows about Lyme disease is hard and insurance will usually not cover long term treatment.

Lyme bacteria has different forms, it is likely that Lyme diseaese is a lifetime battle due to biofilm and the cyctic forms. See chart http://www.lymebook.com/top10forms But with proper treatment you may go into remission. Because of the lack of knowledge about Lyme disease in the general mainstream, Lyme patients have taken to having Lyme awareness rallies, protests, walks and awareness booths across the world in May.

The Worldwide Lyme Protest

May 16-18, 2014 will be the second annual Worldwide Lyme protest. Worldwide Patients are raising awareness and protesting to highlight the need for: 1. Recognition that Lyme disease/borreliosis, and other tick-borne infections, such as Babesia, Bartonella, Rickettsia, Ehrlichia, are serious, and sometimes fatal illnesses.

2. Awareness of the fact that the transmission of tick-borne pathogens, such as borrelia, babesia, rickettsia, via blood transfusion is of global concern.

3. Agreement that Lyme disease/borreliosis should be listed as a notifiable infection. Notifiable status will aid in ensuring that the incidence and spread of this disease are monitored, a necessary precursor to determining the human suffering and socioeconomic impact of the disease.

4. Education of the healthcare sector regarding the accurate diagnosis of Lyme, which in some cases may be limited to clinical presentation due to limitations of serological testing.

*Education should ensure all doctors are familiar with the CDC caution pertaining to criteria for blood tests for Lyme: “This surveillance case definition was developed for national reporting of Lyme disease; it is NOT appropriate for clinical diagnosis...Surveillance case definitions are created for the purpose of standardization, not patient care.”

* Education that Lyme should be included as a differential diagnosis when considering other illnesses that are also reliant on subjective clinical presentation, or have no known cause. This includes, but is not limited to: Motor Neurone Disease (MND) also known as Lou Gehrig’s disease or Amyotrophic lateral sclerosis (ALS) ; Multiple Sclerosis ; Alzheimer’s; Parkinson’s disease; Sarcoidosis.

5. Education of the healthcare sector regarding affordable and effective treatment of both acute and chronic Lyme and other tick-borne infections. This includes the need to update the outdated treatment guidelines of the Infectious Diseases Society of America (IDSA) and to take into account the treatment methods of other Societies such as: The International Lyme and Associated Diseases Society (ILADS) and the German Borreliosis Society (Deutsche Borreliose-Gesellschaft : DBG)

6. Funding for research into tick-borne diseases. Including: Funding for medical research into accurate Lyme testing and treatment ; Funding for research into vectors and reservoir hosts to determine what diseases they may carry and transmit. ﻿

The Mayday Project

This year we will be demanding change. We are demanding that the IDSA revise their guidelines so that those suffering with Lyme disease can get the treatment they so desperately need. We are also demanding that the IDSA improve testing for Lyme disease and fund research to ensure that we will one day have a cure. We ask that you strongly consider attending for two days that will bring real change. Bring friends, family, and anyone else that you can grab. We will be hammering the IDSA and CDC from every angle. Not only will we be surrounding the IDSA headquarters in Arlington, VA. right outside of Washington DC, a billboard truck with our demands will be circling the building for two full days. Thier social media pages, email addresses, fax machines and phone lines will be flooded, as well as hard copies mailed and hand delivered with our demands and stories. This will happen for two long days. Media coverage will be present to capture this. We will also be live streaming the entire event. Change happens this year. Be a part of that change. Come and join us May 22nd and 23rd as we swarm and protest the IDSA. Don't be on the fence, come out and fight for your life! We need you and your help!

Please do what you can to learn about Lyme disease. It is the fastest spreading vector borne disease. Prevention is the best option for living a healthy life.

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